Patient Advocate Spotlight: Amy Sparks

7.5.17

7.5.17

The Ides of March has a unique meaning for Amy Sparks. She was diagnosed with multiple sclerosis that day, on March 15, 2002.

Multiple sclerosis, also referred to as MS, is a disease that disrupts the flow of information between the brain and body. The protective cushion that surrounds the body’s nerves is attacked by its own immune system, damaging the nerves and disrupting information flow. Symptoms of the disease include blurred vision, loss of balance, poor coordination, trouble speaking, tremors and more.

Sparks, who lives in North Carolina, is one of more than 2.3 million people who suffer from MS worldwide. There is no cure, but new treatments have been able to reduce the number of relapses and increase life expectancy.

Symptoms can have a debilitating effect on patients, and many are afraid to disclose their diagnosis to their employer. Sparks recalled when she told her boss about her diagnosis: “My boss called me into his office and showed me an article about his mom, who had MS. He had tears in his eyes and told me that he was going to honor his mom to do everything he could do to make sure I kept my job.”

Sparks understands she was lucky to have such a supportive work environment. She could comfortably explain and educate her coworkers about MS and its symptoms and was eventually able to joke when she needed to leave work to receive treatment.

“I had to occasionally go into IV treatment,” she explained. “In this position, I worked with a lot of baseball fans. I’d talk about my steroids in baseball terms. I’d say, ‘It’s time for a Roger Clemons,’ or ‘It’s time for Barry Bonds!’”

Unfortunately, due to company-wide layoffs, Sparks was soon on the market for another job.

“I realized the challenges of finding a job when you have mobility issues,” she said. “It’s not that people intentionally put obstacles in your way, but it’s incredibly difficult to walk down a steep sidewalk, or walk from one building to another. First impressions are everything when it comes to looking for a job. I have a walker, which can be perceived as a weakness. It’s never been anything legally discriminatory. It’s really all about perception.”

Like many other chronic disease patients, Sparks has experienced a number of issues with insurance.

“I’ve had to choose between doctors – my neurologist and my primary care doctor,” she said. “I’ve also had to deal with the incredible expenses that come along with having a chronic disease.”

Tragically, Sparks said she doesn’t see insurance companies as an ally in her fight against MS.

“I’m worried about the future of health care,” she said. “It’s nerve-racking to be at the point where you are wondering what you can do without.”

Sparks continued: “It’s almost fortunate I have progressive MS. Instead of symptoms coming and going, my symptoms will be constant. There are certain drugs I can compromise on; there are certain treatments I can live without. If someone has been recently diagnosed, they’re trying to handle disease-modifying drugs, MRIs, different treatments. That can make any reasonable insurance policy – and person – insane.”

Sparks believes she can make a difference.

“There aren’t a lot of voices out there,” she said. “There are so many things going on and so many decisions being made. The people who need to be involved in the discussion aren’t included.”

“I have a responsibility to let people know what’s really going on. It’s not all sunshine and flowers, and I don’t want newly-diagnosed people or the public to think that. The communication gap is getting bigger and bigger when it needs to be getting smaller and smaller. Those who can need to speak up and get into the conversation.”

The Chronic Disease Coalition will continue to fight against patient discrimination and advocate on behalf of those who need help the most. You can help by joining the Chronic Disease Coalition.